The voice of lived experience

Pictured – Tové de Chazal Gant and her daughter

Executive Director, Fiona Vacher, recently attended the Lloyds Bank Foundation for the Channel Islands’ annual seminar, which focused on putting lived experience at the heart of charity.

The Jersey Child Care Trust are fortunate to do this in lots of different ways; for example, formally on its trustee board, daily through their employees and more informally, like a recent coffee that Fiona had with a mum, Tové de Chazal Gant, who has benefited from our support. As a result, she offered to share her story:

‘Our family moved to the Island just before lockdown. At the time, we were on the diagnostic journey with my daughter but had no idea what was instore for us. Fast-forward a year and she was diagnosed with a rare syndrome called Dup15q. After the initial shock, our sole focus became helping her get the right support she needed, ranging from services and supports to therapies and education.

‘I don’t think people are aware of how terrifying and exhausting this journey is for parents and the toll it takes on families, it’s not easy. Stepping off the path of life you imagined for you and your child into the unknown is daunting to say the least, suddenly being expected to be the expert, the advocate.

‘We found the Jersey Child Care Trust at a time in our lives when we were completely lost.

We were expected to be an expected to be an expert in our daughter’s condition and know what was best for her, when we had no idea ourselves and received little to no direction from our numerous doctors. It was incredibly overwhelming.

‘Our initial focus was school. I know how essential the first five years of life are to a child’s development, but the additional needs support in schools and ARC programs only start at five years old.

‘The fear and panic set in. What school could she go to? What school would take her? Would they manage her? How do I make sure she gets the same exposure to opportunities and socialisation that other children her age do? Enter the guardian angels from the Jersey Child Care Trust.

‘The team at JCCT truly changed our lives and the life of our daughter by giving us access and hope. All I wanted was a place that would want her, accept her and support her. The JCCT team did just that and more.

‘The team guided and supported my husband and I with the transition. They helped us settle my daughter into her school. They attended all her therapy sessions. They advised us on strategies to help her.

‘They came to our rescue when I had a second child and needed more hours of support so I could spend some time with him. They made us feel seen and helped us come to grips with the new life we were embarking on. As parents to a child who beats their own drum, we get wrapped up in hearing all the “never”, “can’t” and “won’t”. JCCT helped us focus on the “can” – they saw her and believed in her.

‘I am sure I speak on behalf of any family that has had the privilege of accessing support from JCCT. You change the lives of not only our children, but the families who feel lost, scared, isolated and overwhelmed. You gave us the hope and the courage to look beyond what was hard. Thank you! Thank you for seeing and supporting my girl and family.’

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